Patient Comments: Henoch-Schonlein Purpura - Experience

Please describe your experience with henoch-schonlein purpura.

Comment from: Christina P, 13-18 Female (Caregiver) Published: September 10

My daughter is 15. We have been battling HSP for two years. Yes, two years. I cannot even begin to explain the fear the enveloped our lives the first three months of this disease. My daughter had been exposed the strep throat and about two weeks later this began. The spots first showed up as small purple pen point size dots. The spots “exploded” (literally), and have left pock mark scars on her feet and ankles. The swelling was so bad that her feet, ankles and legs were all one size, like a small tree trunk. She was in severe pain and could barely walk. We saw several doctors, for several months, before we were able to find one at our local university who would know what this was and who specializes in this disease. This doctor is not friendly and has a horrible bed side manner. Unfortunately, she is the only one who seems to know anything about this disease and so we are stuck with her. She makes us uncomfortable, which makes it all the worse for us to deal with this disease. Finally, after one year and five months of the onset of this disease, we were able to get a biopsy done of the spots. Very quickly, the results came back as positive for HSP. It took two months for her to heal from the biopsy. For several months, my daughter was on as much as 40 mg of Prednisone a day. She is now on 4 mg a day. She also takes 200 mg a day of the immune suppressing medication, Imuran. My daughter also takes Zantac two times a day to help with the problems she now has with her stomach. She now has migraines that she must take Imitrex for. We had to have her started on the Depo-Provera contraceptive to help protect her ovaries from the Imuran. The Imuran has helped, we have not seen any spots in six months. But it has compromised her immune system. She contracted the flu last winter and was sick for over six weeks. We continually see swelling, though it has not been as bad this summer. Now that the weather is changing, the swelling is getting worse again. Any activity, even walking, causes severe swelling. We are reduced to taking pictures to prove to this specialist that things are not going well. Unfortunately, my daughter is that small 2% of the HSP population that it takes aggressive treatment to hopefully remove this disease from her successfully. We cannot take advantage of the chance to get her braces because she doesn't heal well. She cannot play volley ball or roller blade with us. It makes it very hard for a young girl to be a normal teenager and for a mom to sleep with peace at night.

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Comment from: ddk, 13-18 Female (Caregiver) Published: September 05

My 13-year-old daughter has been told this week that she has HSP. She had the bleeding into the skin from her feet to her middle-back and arms. She got tested for it, but in the last 12 months has suffered from a lot of chest infections, which seem to have been the cause of it. The blood results showed she has a low immune system. I now have to keep a record of her urine samples by using dipsticks to keep an eye on her kidneys to make sure there are no changes of blood present in her results. Although we have had to travel quite a distance away from home to find a specialist in HSP, it is worth it just to know that she is being looked after and there has been a reason to why she has had to have a lot of time off school. The school has been very supportive and have issued her with a medical pass to be excused from class for the toilet as so not to cause anymore stress to her body by having to wait a long time to go to the toilet.

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Comment from: 25-34 Male Published: September 05

I was about 6 or 7 when diagnosed I was with HSP. In total, the ordeal lasted about a month or so. I was hospitalized for about a week or so. Initially, it began with a speckled rash on my legs with no pain at all. A day later, my ankles and feet were incredibly swollen and caused significant pain even just lying still. My family doctor was unable to diagnose it successfully, and upon referral to a pediatric specialist, we knew what we were dealing with. The swelling affected my entire body, even my skull. Sleeping was nearly impossible as the pressure of my head on a pillow would cause tremendous pain. Treatment was intense (blood taken daily for testing) and thankfully successful. I'm not sure of the exact treatment, but I know steroids were involved, most likely prednisone. I've not had any problems since. I am now 25.

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Comment from: bitten, 25-34 Female (Patient) Published: August 08

I had Henock when I was twenty three years old. I am an Indian female living in South Africa. None of the public or private medical care could diagnose this until the proper tests were done a skin biopsy was taken etc.. When I first experienced it that weekend I was rushed to hospital due to excruciating stomach ache and vomiting, nothing helped their meds made it worse. I was in and out of hospital for six months, very little intake of food, constant stomach ache, extreme acidity in the stomach and reflux, lost fifteen kilos and was ready to give in. Thanks to my parents who went through it all with me. Day and night I overcame. Have fortitude. The best treatment was steroids -prednisone-for six months, drink lots of water slowly but surely drink it all up. Ice blocks to cool the stomach and a bit of egg nog if possible to treat the ulcer. Tremahexel for the pain allowed me thereafter I recovered. Any person that experiences this to its full might will know how important support and prayer along with good medical care is required.

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